Warrior Mum - Leo's Journey

Please watch Skills for Care video

This week's
Leo's Journey is introduced by warrior mum, Jo Worgan

It was an absolute honour when
Michelle approached me to introduce this week’s warrior mum. I first had the
great privilege of ‘meeting’ Leo on twitter. We instantly shared
a bond as we both wanted change to happen with regards to bullying and online
abuse aimed towards those individuals who are on the autistic spectrum, we both
felt so passionately about this as we are both mothers to sons who are
autistic.

Tom, my little boy, is now 6 and was
diagnoses with Autistic Spectrum Disorder at age 3. However Tom’s early interventions
and access to specialist autism provision has been dramatically different to the
experiences of Leo’s son, Stephen. I was horrified to learn that Stephen was not
placed into a specialist autism school until the age of 11 even though he is
severely autistic and as Leo states in her story, as a result of this “he
screamed and banged his head24 hours a day. It was nightmare” No child should
have to go through this and nor should the family. How was this allowed to
happen? Early intervention as we all know is key for our children who have
autism and Stephen was not allowed this, through no fault of the family, they
fought to get help and services put into place but like many other parents’ who
have autistic children these basic rights were denied.

Leo at present is fighting to get her
son placed into a specialist autism residential unit, at the moment he is in a
psychiatric ward, hundreds of miles from home. He has been sectioned under the
Mental Health Act but as Leo clearly states, this is wrong. Her son is
autistic, not mentally ill. Her son is kept indoors, drugged up and is denied
access to his family during visiting hours once a week if the staff deem that
he is not ‘well enough’ to see them.

This situation is barbaric. Here is a
young man who needs specialist autism intervention and professionals who know
and understand him and instead he has been placed into a psychiatric unit were
the staff have no knowledge or training around autism. This is unacceptable.
Stephen’s basic human rights are not being met at all.

Leo’s story deeply affects me,
although my son is much younger I worry about his future and how things will
change when he becomes a young man. Will my voice no longer be heard just as
Leo’s has been silenced? Will his human rights be disregarded?
This frightens me tremendously.

Stephen is a happy and bright young
man, full of energy and love. You only have to take a look at the photographs
to see the special bond between him and Leo, this young man has so much to
offer society and he should be enjoying life. Instead he has in essence been
locked up and kept away from the rest of the world. Leo is not accepting this
and neither should we. This is Leo's story.

"My
son is so loving and caring. When he sees me arriving on the ward he has this amazing
beautiful smile. Then, as I am about to go he changes, too sad and too upset.
And it just breaks my heart that after years of struggling for specialist care
and stability in Stephen’s life, that my son is living indefinitely on a
psychiatric ward and nobody seems to care."

I was born in Madeira, Portugal in March 1964 and
have two brothers whom I adore. My childhood was somewhat dysfunctional. I had a
mother who either did not care what was happening around her or because of my father’s
violence was too afraid to do something about it.

I ran away from home when I was 16 and went to live
with the most amazing and my most treasured woman in my life. The woman was my
great aunt, whom I had loved since I was a small child. I then went to school and
college and came to England when I was 19.

One year later I had the news my father had committed
suicide.

At 23 I was married and at 27 I had my first child,
Jamie. She was my world. When she was four I had my second child and my number one
man. Stephen was born at 38 weeks, weighing ten and a half pounds; a normal
delivery and he was very healthy.

My son developed very well and was an extremely
happy child. By the time he was 14 months he could say 24 words in 3
different languages: Portugese, English and Spanish.

Stephen's baptism

By 17months, right after my son had the MMR, he
became very very ill with a soaring temperature and convulsions. It went on
like that for exactly 3 months. Doctors did nothing, and I knew immediately
that the MMR had caused it. My son could no longer speak. He pointed at
everything. He could no longer ride his mini bike, walk up the stairs or climb
on to anything. He cried and cried, screamed non-stop 24/7. I would go to
doctors, hospital, paediatrics, and nothing or no-one could help or do
anything,

It went on like that until Stephen was 3. He went
to nursery for 2/3 hours but they were not able to cope with him and he was at
home all of the time. The head of paediatrics would call me paranoid telling me to
go home, that my child just being naughty and wanted attention. I knew my baby.
And I knew that was not the case. But still no-one would listen.

Stephen

Stephen with Mum and sister, Jamie

When he was almost 7 the educational psychologist finally
diagnosed Stephen with autism. He went to a special school but not one that
specialised with autism.

Stephen's Holy Communion

Jamie and Stephen

Were they able to meet Stephen’s needs?

They had no specialist training with autism and did not understand why
he behaved the way he did. He screamed and banged his head 24 hours a day. It
was a nightmare. He would not sleep for weeks and then suddenly when he became
so tired he could hardly stand up, he would sleep during the day.

His behaviours became worse and worse as time went
by. When he was 11 we finally got him to an autistic school. But by this time
he was becoming a teenager and stronger, he would hit us and would break
everything in the house.

Were the school able to offer any support strategies?

School was brilliant at helping. We were lucky that
he was in a classroom where his teacher was taking a PhD in autism. She would
put in place some ways of coping strategies. But apart from the teacher we
had no help for years and no support from social services.

Stephen travelled to and fro on school bus but that became impossible when he was 13 and we then had to drive him ourselves. It was a very
dangerous situation as only one of us would drive him. One day he undid his seat
belt and hit his father. His father lost control of the car and was very lucky no
other cars were on the road. But his father had a head wound. After that incident
the education department organised a taxi with an escort, but they would send a
driver with no patience and one day Stephen had a meltdown in the car and the
driver stopped the car and hit him. So I decided - no more. I began to travel
with him on the school bus.

When did the social services finally come your assistance?

I got pregnant with my little boy. I lost all
my calm and went to the social services. I was so worn out and angry. At least
they took some notice because we were offered one night a month at a respite home
for moderately disabled people. By that time Stephen was fifteen and a half and
that placement broke down. They could not cope with Stephen and eventually refused to take him. Stephen had two staff looking after him there
and they could not cope. But I
was alone with him at nights and two other children and they left me to it. So
by the end of summer at almost 16, we sought legal advice and found a solicitor
that specialised in children’s needs to look into Stephen's case.

Did they sit up and listen to you? The solicitor wrote
to Islington, got all the notes, but not much response to his enquiries. He wrote again, this time giving Islington 48 hours to respond, or he would go to a judge. He
had the judge already in hand, but having received that letter, amazingly, it
took Islington just a few hours to get their act together.

Stephen was given a place in a residential school
for children with autism.

A tender moment with Jamie and Josh.

Tell us
about Stephen and what he likes?Stephen can't hold
a conversation but he can make himself understood, when he wants to go to the
park, to the shops, to the toilet, have a bath. He loves his bath in the
morning and shower at night. If he does not have this routine what little sleep
he normally has is disrupted.

He loves
horse riding, rock climbing, swimming and long walks and by long walks I mean
for 2-3 hours.

He loves
music and dancing to it. Bruce Springsteen, American anthems, and jimiraqui are
his favourites. But he loves karrang radio, Pop music, and most importantly he loves
classical music. He can name any composer you put on without telling him who it
is.

He likes cartoons
or video music on the TV.

Enjoying time with Jamie and Josh

He has all
his favourite bedding from sheets to duvets to covers. He has his cuddly toys, Lion king, Bambi and pingu are his favourites. He loves his photos and
wall poster. He has a photo with princess Ann and him in her helicopter, and
posters and things from David Beckham and Cristiano Ronaldo. He met David
Beckham many years ago, and to this day he remembers.

He loves
going to Heathrow and Gatwick to see the planes land. Loves trains and likes to
go to a station and see them arrive and depart. He loves going to the sea side
and going on boats. Obsessed with it.

He loves his
clothes. He prefers jeans and nice t'shirts and shirts if he's out. At home he likes
sweatpants. He loves his trainers and any kind of boots and also his loafers.

He’s very
particular and loves to be clean. He’d NEVER have a beard. If he is dirty he
will ask to change his clothes and wash his hair, Lol. He likes his favourite
perfume; Calvin Kline.

The same for
his underwear; if Carers give him pants that aren’t Calvin kline, he says "No!
No Stephen." Lol. And they have to be boxers.

He sure sounds like a boy with a big personality. How wonderful that he settled in the school. It was an autism residential
placement in Barnham, Norfolk. At last we felt Stephen was in the right setting. He loved it
there. He had all that open countryside
and forest to go walking for hours. He loves the freedom of being outdoors in the fresh air. However, he'd been there for two years when he nearly died from a serious head wound; a self injury that none of
the staff witnessed happening. I got a
phone call at about one in the morning from the school. They said my son was in hospital and I
needed to get there as soon as I could. The neurosurgeon was waiting to consult with me over Stephen's medical treatment. When I arrived the surgeon began to explain that
Stephen had a very large haematoma and was close to putting pressure on his brain. He said they would have to drill a hole in his head and
drain the blood out, and although dangerous, without the op, his condition would deteriorate further. He said it was a very simple procedure - but it did not turn out quite like that. Post operation, my son was very ill and still bleeding heavily. The surgeon decided he needed to repeat the procedure and drill into Stephen's skull again. And again, twice more, then Stephen kept loosing
blood. The hospital decided to call in a new doctor who arranged another scan and saw the bleeding was coming from much deeper under Stephen's skull. So one more op, and drilled deeper in,
and that's when my son lost 3 pints of blood, and was very very ill in intensive
care for two months. After that he went back to
his residential school.

Were you happy for Stephen to return to the school?

Yes. On the whole the carers at the school were amazing: I loved
those guys and my son was normally very well cared for. They were like
an extended family and adored Stephen. Sadly 10 months after returning to
school the managers told us they could no longer keep Stephen. They admitted
their school was not the place for Stephen's complex needs. They gave me two
weeks to find somewhere else for my son to live. We were heartbroken.

Social Services told us that the best place to put my son would be
at St. Andrews. We were assured at the time that it was an autism unit. We were
also told medications would be stopped, he'd be given a special diet,
psychological intervention and therapy would be put in place.

Needless to say none of this happened.

How far is St Andrews from home?

It’s in Northampton so it’s about
80 miles. We go on the M1 and it takes an hour and a half to two hours,
depending on traffic.

Do the staff make you welcome?

Well they are quite friendly.
There's one or two who sort of make me feel guilty for Stephen's
behaviour, but generally they are nice people. The trouble is they have no
knowledge of how autism and behaviours work, so in other words they are not
trained in autism, and certainly not on severe autism.

What about visiting? Is it an open door policy? Allocated visiting hours
or do you have to make an appointment to visit your son?

It's a 2 hour visit by
appointment. However, we have never spent the two hours with Stephen. We arrive
and are made to wait sometimes 30 to 40 minutes. And the appointment is on a
Sunday 2 to 4.

Tell me about the times you visit your son and are told you cannot see
him?

We arrive and I go in to the hospital
reception and the person on reception calls through to the ward. Then, I am put on the phone and told by a
member of staff that visiting will not be possible, the reason being is that
Stephen is having a not so good a day.

Are you able to challenge that decision?

There have been times when we
have been told visiting is not possible but a member of staff agrees for me to
just go upstairs and say hello, and as soon as my son sets eyes on me he breaks
into a run towards me with open arms and the most beautiful smile.

There are occasion when I am
allowed to see him for 10 minutes and I get there, and he is a zombie,
catatonic, with so much medication. And no one tells me what medication he's on or shows me any notes. Again, it's a hospital policy not to share that information.

Do you think some of the staff pass judgement on you?

Usually we are turned away by the same member of staff. He is the one who makes me feel guilty; that it's all
my fault my son is having a meltdown. He offers me no explanation as to
why I can't see him.

Have you complained about Stephen’s rights to see his family being violated?

Their policy for Stephen is the
same as the others patients. It’s a psychiatric hospital and Stephen was
admitted under Section 3 of the Mental Health Act. If Stephen is not so happy, no matter if it's mild, they, the staff, follow
the Mental Health Act policy and this is what needs to be lifted. One member of staff that I like did go to
managers and say the act is unfair on Stephen, because Stephen is not mentally
ill, he is autistic and therefore the Act 3 should not apply, but no can do,
they refuse to budge. And no matter how insistent I am to see my baby, they still say no.

So you’re not turned away from visiting Stephen for
the sake of your own safety?

No not at all. My son is loving
and caring and when he sees me arriving on the ward he has this amazing beautiful smile. Then as I am about to go he
changes, too sad and too upset. And it just breaks my heart that after years of
struggling for specialist care and stability in Stephen’s life, that he is
living indefinitely on a psychiatric ward and nobody seems to care.

How does it make you feel when you’re not allowed to see Stephen?

I leave all the things I brought
for Stephen at reception and off I go with my heart breaking. I am so happy on
my way to visit but come back in bits. I know my son, and I feel he thinks I
abandoned him.

A family visit to St Andrews

Finally, what would you like to see happen, not only to
improve the quality of Stephen's life but also to give the whole family peace
of mind?

Well, at the moment Stephen's social life is non-existent.

He
was put in a self-harming ward, not an autism specialist unit. It also turns
out that they do not have an autism unit for over 14s, so he was placed with
drug addicts, alcoholics. There are no late teens in his
ward. All
individuals on the ward are aged over 25 to late 40. Stephen
is locked up 24:7. If my son is not having a good day or is unsettled they
won't take him out into the grounds, this is a huge space which Stephen would
love. He goes for weeks and months without going outside into the grounds. For
the past 15 months he has not been taken out into the community.

So I would like for my son to have
freedom and to have a fulfilling life; to go out in to the community and
be able to cope with social situations. To be near his family and one day
perhaps even come back and live at home, where he is very much missed and
loved. I would love to see my son sit at the dinner table, where I still
sometimes absentmindedly set his plate. I want my son back..

Petitioning Manager LD Sue Powell and 2 others

This petition will be delivered to:

Manager LD

Sue Powell

Nhs islington

Director of services

Simon Galczynski

Bring my son Stephen home & care for him in our community #bringstephenhome

My son Stephen is 19 years old. I love him to bits but right now I am desperately worried for him.
He has autism and finds it hard to communicate. For over a year now
he has been living in a unit at St Andrew’s Hospital, Northampton, which
is 80 miles from our home in London.
He has learning difficulties but he is being kept under the mental
health act at a psychiatric unit, with patients much older and with a
range of different conditions.
He has the sweetest smile but since he has been there I haven’t seen
it once. It's not the right place for him - even his consultant agrees
he should not be on the mental health register and should be moved
somewhere more suitable.We have to travel miles each weekend to see him and sometimes
we only see him for a few minutes, sometimes we travel all the way to
see him, only to be told that we are not allowed a visit. And
other times he has been put on so many drugs he just falls asleep. It's
is heartbreaking to have to leave Stephen there. He is covered in
bruises and has gashes all over his head from where he has hit himself
from being anxious.
Right now the local authority is reviewing where to place Stephen.
They want to move him to another hospital in Colchester but that won't
solve anything.
We want Stephen to have a better quality of life; to be able to spend
time outdoors, to be around his family more often. Ideally we want
Stephen to live with us as a family with the support of carers. He
should also be taken off the the mental health register, so he has more
freedom for how he lives his life.
Other families who have loved ones with autism have successfully
fought to have them live in homes with specialist carers near loved
ones. And the Government made promises that people with autism and other
learning difficulties should be cared for in their communities with the
help of their families but this promise is being broken for Stephen.Stephen is being let down by the institutions that are meant
to be caring for him - locked up in a hospital and lost to a system that
wants to tick boxes instead of care for my son.
Stephen deserves to be allowed to live a life in safe place with
carers who understand his needs and surrounded by people that love him.Please sign my petition and help my family but most of all help my son.

Letter to

Manager LD Sue Powell

Nhs islington

Director of services Simon Galczynski

I'm
calling for NHS islington & islington Social services to bring my
son closer to our family home, not have him hundreds of miles away!

6 comments:

Leo what a heart wrenching story. I admire your strength, it is awfull how they expect Stephen to stay so far from you. I hope that they listen to reason and bring him a lot closer to home. Good luck you are a true #warriormum - wendy xxx

My God, This is a heartbreaking story! Stephens human rights have been (are being) violated - I'm appalled that treatment (perhaps lack of would be more appropriate) such as this is allowed to happen, in this day and age and to an already incredibly vulnerable young man. It's scandalous!

I hope with all my heart Leo that your petition is a success and you are able to bring your son home.

This is simply outrageous....words fail me. Prisoners for rape and murder seem to have more rights than Stephen and his family. Hello, this is 2014, how has this been allowed. My heart breaks for the lost years that Stephen and his family have endured. SOMEBODY NEEDS TO TAKE RESPONSIBILTY FOR THIS FAMILY, TO GIVE THEM THEIR RIGHT FOR A FAMILY LIFE, SUITABLE FOR THEIR NEEDS. It's immoral.

Thank you for your kind words and comments about my story. Sorry for not replying until now but have only just managed to read your story.

It is absolutely horrendous and you have suffered and continue to suffer much worse than we do.

I can’t even begin to think of how you cope.

It’s a shame, you could not have escaped Britain with your son ie Maderia, beautiful place people and food, we all, including Issy, spent a week in Fungal, as I do feel the autistic, despite the huge amounts of money spent on them, do better with less state intervention, and more private control by those that love them. They are now effectively written off cash cows. When all they need is freedom, space and medical care ie no poo impaction and love.Autism, I believe is a huge range of conditions, that are not the same.

We have no pathology ie no scans or physical abnormalies, the one eyed psychologists is king, this has led to a growth industry in academia, and then autism qualifications for specialist carers which often leads to labelling and prescribed care, with careers being made but of little help to our children.

Its sounds like your sons is a vaccine damage condition. If in USA you’d get millions and organise your own care.It is similar in most fields of mental health, and unlike physical, even less complaint can be made ie impossible to sue NHS, or NAS if the treatment is wrong and causes injury, or if the care is abusive.

Care is in secret and NHS unaccountable, look at Staffordshire .

It appears both your son, and Claire Dyer and all the stories are similar ie Claire was let down by her accident in school, most likely they were at fault, and should have been sued, that is why they all close ranks and self preserve.Issy was same only she was just slapped at 7, but then written off, and each school let her down because they are ruled by prescription, and self-preservation, and basically insurance premiums. And we have no one acting in our interests and cannot fight the state cabal.

Self-harm is often used to cover abuse and/or neglect. My daughter had 48 bruises in one day all blamed on self-harm, after an incident of restraint, yet this was covered up by self-harm. If I were to sue NAS for it I would have to prove this was impossible by instructing an expert that itself would be very expensive and default as most of these experts are looking for future work with NAS or NHS or CAMHS and would not be willing to act even if they could be found.

The abusive comments of her NAS carers i.e. ‘you can’t live your f.. family’ ‘Stop your f..in questions’ used by CAMHS and SS to show she was psychotic i.e. hearing voices saying these things to her, not care workers, put her on respiridone to turn her into a zombie so that care could be easy for their 200,000 per annum residential home.

Check out your son does not have a poo impaction Issy has had two in the past 6 years through stress neither treated or detected in state care.

One psychologist Helen Blakemore wrote’ Weaving the autistic tapestry ‘,and realised that effectively back in 2006, the gov had given up on autistics and she went to Canada she was like Wakefield persecuted by the system and NAS would not put her book on their list.

The system is sealed and the most we can do is to try to expose it and at least stop it getting worse i.e. the encagement policy.

You are right about the MMR and I think that is why BLAIR through so much money at NAS in 2005, they were the 6th largest charity but practically bankrupt before the MCA independent living gravy train, Yet in their trust deed they are not allowed to investigate into the causes of autism. And if you mention MMR etc connection as I did once on their website you will be trolled as a conspirator.

As you know, you have a handsome, funny, health strong son who has been destroyed by the system, first by an injection and then by their care of the damage they caused, and as with my Issy as soon as their self preservatory insurance based risk assessment kicks in he is moved on to a worse more restrictive set up which costs more money and makes him worse. If this were the USA you’d have had a multimillion pound pay out by now and private companies looking after your son in your own facilities. I read of a resettlement for injection based autism for millions in the New Scientist.What parents need is to be able to contact each other and have a Facebook site where they can get all info on this unfortunately we have mainly misinformation and propaganda within the systems ad no one is acting in ours or more importantly our poor childrens best interest.

Sorry this is so long but please e mail me on finolamoss@gmail. Com where we can if you want continue this discussion. Really glad I was able to get to know about you and your brave handsome son who has been so very abused by the NHS etc.

With a Little Help From My Friends by Michelle Daly

I Love Charlotte Bronte by Michelle Daly

About Me

What can I say? I am passionate about justice and fair treatment for anybody and everybody and cannot stand bullies. I enjoy life but when things get too much and the endless fighting for my daughter's rights gets me down, I write to keep myself sane.